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IDF 2011 National Conference: HOT! HOT! HOT!

The IDF 2011National Conference was HOT! HOT! HOT!  It was HOT outside the conference center in Phoenix (110 – 116 degrees everyday) and HOT inside with patient excitement and enthusiasm.  And the Advocacy Breakfast Symposium was on fire!!

The Advocacy Breakfast on Saturday morning was jammed with highlights of the activities  IDF has been involved in  over the past two years.  It is amazing what IDF has been doing on the advocacy and public policy front!  Besides lobbying on IDF’s Medicare IVIG Access bill in Congress, IDF has been actively engaged in working to get newborn screening for Severe Combined Immune Deficiency (SCID) in all 50 states.  Volunteers have been active with many successes in 30 states and more are on the way.

IDF has confronted two insurance companies whose policies were detrimental to patients with primary immunodeficiency diseases.  Minnesota volunteers rallied to fight Blue Cross-Blue Shield Minnesota for better IgG guidelines and no systematic denials of care.  Pennsylvania volunteers joined forces to fight a one brand only, “fail first” formulary and the wholesale switching of patients to only one brand of IgG therapy.  IDF has vigorously supported efforts to fight the cost shifting policies of the insurance industry

And IDF has been extremely active advocating for fair and equitable implementation polices of the recently passed health care reform law.  Working alone and in coalition with other plasma using patient groups ,the American Plasma Users Coalition(A-PLUS), IDF has spoken on behalf of patients regarding what constitutes Essential Benefits, the Pre-existing Condition Insurance Program , State Health Exchanges and Biosimilars (generic biologics).

A highlight of the Advocacy Breakfast at the National Conference was the presentation “What You Need to Know about The New Health Reform


A patient addresses the Advocacy Breakfast speakers during Q&A

Law” by Lisa Codispoti, an IDF Board member.  She explained the provisions of the law and its potential effects on patients.  She emphasized that while there still are many imperfections with the law, certain provisions - like the elimination of denial of coverage because of pre-existing conditions, elimination of lifetime and annual caps and coverage of children up to 26 on a parent’s insurance policy - are huge advances and protections for the primary immunodeficiency community.  To view Lisa's presentation go to the IDF Advocacy Center page and look under Our Featured Stories.

Julie Birkofer, Vice President of the Plasma Protein Therapeutics Association, thrilled the audience with her calls for more advocacy participation.  She also handed out hundreds of huge buttons calling for the support of our Medicare IVIG Access legislation (HR 1845.S 960) in Congress.

And speaking about our HR 1845 and S 960 Medicare IVIG Access legislation, Sue Ramthun, IDF’s legislative consultant, outlined the legislation and what needs to be done going forward.

The audience at the Advocacy Breakfast was enthusiastic and energized.  They pledged to sign up, join and participate in IDF’s Action Alert system to let policy makers like Congress, State Legislatures, Governors and insurance companies and regulators know that the primary immunodeficiency community will stand up for their rights and interests.  WE ARE NOT GOING AWAY – SO DEAL WITH US!!!

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